Thursday, October 27, 2011

Drug Trial Visit #2

Mondya was Drew's second visit for the STX209 drug trial he's participating in.  We took Blake with us, so that was different than last time.  They both did well in the car on the way there.  We stayed at a hotel near Valparaiso, IN.  It was the same one we stayed at two weeks ago.  We thought it would make things more familiar for Drew.  We requested a ground floor room so we didn't have to obsess about the elevator. 

Last time we went, he was super-excited about going on the elevator, and perseverated about it, but when we got there, he screamed and cried and begged us not to make him go on it.  We told him he could take the stairs (to the third floor) and that was fine, but going down the stairs was another problem.  We were starting to wonder if we'd be stuck up there forever.  lol.  So this time we decided that we'd get a ground floor room and if he wanted to ride the elevator for fun, he could.  He chose not to, however. 

The front desk clerk was really nice and Eric told her that we were there because we were taking our son to Chicago for a drug trial.  She said she'd give us ten dollars off our room and the next time we stay, we should ask for her and she'd give us the same discount.  She also popped some popcorn for the boys in old fashioned popcorn machine. 

We took the boys to Chili's for dinner.  My blogger friend Bonnie told me that they can't take their kids out to eat.  She has five year old twins with Fragile X.  (See her blog HERE)   We've had our share of dining-out difficulties over the years.  When the kids were younger, I'd keep them in their seat by hanging a diaper bag strap or purse strap over their lap and let the bag hang down behind them.  This gave them deep pressure input from the weight of the bag and reminded them to stay put. 

It annoys me that people are perfectly fine with babies and toddlers being strapped in for safety but when there is a larger kid with special needs, suddenly it is not ok.    Do what you can to make things work for your family and if you get weird looks from other people, don't worry about it.  Ok, rant over.

Anyway, now that the boys are bigger and I no longer carry a diaper bag, we usually request a booth wherever we go.  We put the boys in first and block them in. This works pretty well.  Occasionally Blake will slither under the table and sit on the floor--much to Eric's chagrin, I might add. So, back to Chili's.  They had these super-awesome things at the table called a Ziosk. 

For 49 cents, we could watch all the classic cartoons we wanted.  There were other game apps available too, but we stuck to the cartoons. 

After Chili's, we went to Target at Drew's request.  We didn't need anything, but Drew just really likes that store.  We walked around then went back to our hotel.  The front desk worker had indeed made popcorn, so we loaded up and went to our room. 

Eric tried to talk both boys into going swimming.  Neither was interested.  He decided to go by himself.  I got the boys settled down for the night and read a book while Eric was gone.  When he came back, he said that I should go down there.  There was no one else around, and the whirlpool was nice.  So that's exactly what I did.  It was so relaxing just to sit in the hot tub and not have to worry about the kids. 

The next day was the big day.  Drew got two Xanax to calm him before the appointment.  He didn't perseverate on the way to Chicago or seem worried at all.  Blake was more anxious than Drew, actually.  We got there and Drew was pretty cooperative.  He didn't sit still enough for the blood pressure machine to work, so Dr. B-K had to do it manually when she got in the room.  We got through everything up to the blood draw.  We knew we'd have to have him lay down on the floor so we moved to a room with carpeting.  We had Blake in a chair and we got Drew on the floor.  I was straddling him and Eric was pinning his legs down. Drew of course, was crying.  Blake started hollering, "Stop it!  You stop it, Daddy!" and came to Drew's defense by getting off the chair and hitting Eric on the back.  I don't know, maybe it was love for his brother or maybe he thought he was next.  Anyway, it was over quickly and we had two boys to console. 

After that, we went went to Portillo's, a place known for their Chicago hot dogs.  It was an interesting place with a sort of fifties feel.  It was pastel colors and chrome.  The food was great.  Drew loved the poppyseed buns and Blake loved the hot dogs, so they worked out a deal between themselves. 

We got home at 6:30 and were all very relieved.  Next time I am going to attempt to drive to Chicago and back in the same day.  Should be interesting. 


Bonnie@TheFragileXFiles said...

Oh my, your blood draw experience sounds a lot more stressful than ours! My guys are small enough that we put them up on the table, one at a time and the one that isn't having his blood drawn waits in the waiting room with someone.

Actually this last trip, our third, was the easier blood draw. they both cried a little but were over it quickly.

I wish we could go and come back in one day..... it's about an 8 hour trip. So hotels it is, for us.

Bonnie@TheFragileXFiles said...

Thanks for the mention, too! ;-)